Table 2

Stakeholders involved in big data research: proposal of potential roles

StakeholderCharacteristicsPotential role in big data research
Clinicians/health professionals, biomedical/health/life scientistsKnowledge of the diseases, prognosis and treatmentsClinically relevant question, study protocol, data collection, interpretation and implementation of findings
Data scientistTo analyse and interpret complex digital data, should be proficient in a broad spectrum of analytical methodologies that encompass traditional (biostatistics, epidemiology, discrete-event simulation and causal modelling) as well as emerging methods 67Provide early guidance on the best tools or algorithm to analyse the data
Analyses of data and interpretation
Computational biologistInvolved in the development and application of data-analytical and theoretical methods, mathematical modelling and computational simulation techniques to the study of biological, ecological, behavioural and social systems. Has domain knowledge in biologyProvide early guidance on the best tools or algorithm to analyse the data
Analyses of data and interpretation
Data protection officerExpert on data privacyOrient the project team in privacy by design practice
Patients, carers, patient research partners and patient associationsPeople living with RMDs who have knowledge of day-to-day life with RMDs, from diagnosis to treatment and long-term managementParticipation in all stages of the study, from the protocol to the interpretation of the findings
Database expertExpert of the data in a databaseHelp the project team to understand the real ‘value’ of data in a database, and provide guidance on data selection
Computer sciences expertExpert in computer sciences solutionsProvide guidance on the best technical solution to manage the big data, from its collection to massive calculation solutions
  • RMD, rheumatic and musculoskeletal disorder.